GHEEN – When elementary students started Coins for Kathryn to help with her medical expenses, her brother Cash Lofgren thought his classmates should meet his sister. So she became the guest of honor at Friday’s “show and tell” in the second-grader’s class at the North Woods School.

Students warmed immediately to Kathryn, admiring her long, curly red hair and asking more than a dozen questions about the three-year-old which Dan, the father of Kathryn and Cash, patiently answered.

Although a number of questions were about Kathryn’s medical condition, others were simply interested in the young girl’s interests.

“Does she like books?” asked one student. “What does she like to watch on TV?’ another wondered.

“She loves football,” said Dan, who added that it was a race on Sundays to dress Kathryn in either a Vikings or Packers jersey. But, he admitted, he gave up on the Vikings this year, so on most Sundays Kathryn wore her Packers jersey — the team that her mom Kris, who has family in Wisconsin, supports.

A lifelong struggle

Kathryn was born on a leap day on Friday, Feb. 29, 2008, and seemed to be a perfectly healthy baby. Her Apgar scores, which test a newborn’s health, were perfect 10s, according to Dan.

But less than 24 hours later, a nurse observed something unusual with Kathryn’s eyes. Baby and mother were taken to St. Mary’s Medical Center (now Essentia Health) in Duluth so Kathryn could be evaluated at its neonatal intensive care unit.

A scan of her brain revealed the damage. The frontal lobe was abnormally small and calcifications within the brain were blocking the signals that brain sends to the body to function properly.

Doctors delivered a devastating assessment — Kathryn would most likely never walk, talk or have cognitive function.

Dan said doctors speculated that her brain damage was due to an undetected viral infection that Kris contracted while pregnant. Cytomegalovirus, a common virus, often has no symptoms and is usually harmless. However, it can have disabling or fatal consequences when it infects an embryo in the womb.

Dealing with the consequences has been an ongoing struggle — from feeding issues to determining the right mix of medications to assist Kathryn.

After initially struggling to feed Kathryn her baby formula orally, her parents and medical staff opted to insert a gastrostomy tube in Kathryn. The tube, which was surgically implanted in Kathryn’s stomach, is accessible through an external “button” on the abdomen through which Kathryn receives liquid nutrition and medications.

“I tell her that she’s having pizza or whatever the rest of the family is eating,” Dan told students at North Woods, where he demonstrated how Kathryn eats.

Kathryn also went through several episodes where she would be crying and screaming all day, sometimes for multiple days in a row. Doctors at the Gillette Children’s Hospital in St. Paul concluded it was “central brain irritability syndrome” or basically neurological pain, Dan said. New medications to manage Kathryn’s pain were added.

Dan said Kathryn is currently on a series of meds, which are delivered three times a day. She also receives in-home therapy every week and therapy away from home every other week. That’s in addition to regular visits to the doctors about four times a month. Two in-home nurses care for Kathryn on weekdays when Dan and Kris, who both work for the Range Mental Health Center’s ADAPT program, are away.

Kathryn also has significant muscle tone issues, which require her to wear multiple orthotics, including braces on her hips, hands and legs. She recently underwent surgery on her hips, which had popped out their sockets, Dan said.

Kathryn’s frequent visits to doctors and multiple medical issues initially frightened her brothers Cash, 7, and Quinn, 6, who feared their baby sister would die. Quinn even once told his parents they would need a new baby sister because Kathryn would be gone.

But the boys have since adapted and take their sister’s differences in stride. “I think Kathryn likes to be just who she is,” Cash says.

Fundraiser planned

In addition to the physical and emotional toll of Kathryn’s struggle, the Lofgren family has to cope with the medical costs. Even so, they frequently have turned down offers of fundraisers to help with Kathryn’s medical bills.

Cara Jacka, who works with Kris in the ADAPT program, said they eventually relented.

“We’ve been asking for three and a half years what we can do,” said Jacka. “But they’re private people and it was tough for them to accept. We told them it was for us. We really need to feel like we’re doing something for them.”

The “Caring for Kathryn” spaghetti dinner will be held from 11 a.m. to 4 p.m. on Sunday, Jan. 29 at the North Woods School cafeteria. Cost is $7 for adults, $5 for ages 3-12 and free for children younger than 3.

In conjunction with the dinner, a silent auction, raffles, basket drawings and bake sale will be held. Some items already received for the auction include autographed photos of Minnesota Vikings Adrian Peterson and Percy Harvin and a team-autographed basketball from the Minnesota Timberwolves.

A ticket raffle is currently underway. Tickets are $5 each. First prize is $1,000, second prize $500 and third prize $200. The drawing will be held on Feb. 29 (Kathryn’s fourth birthday).

Tickets are available for purchase at the Cook Area Credit Union, The Dollar Barn and Dawn’s Hidden Shears. Tickets are also available from Nancy Reing, Tammy Palmer, Denise Parson and Becky Lappi.

Anyone interested in donating or helping with the benefit can contact Parson, Lappi, Palmer or Reing.

Meanwhile, Kathryn has been a source of inspiration for many and has brought the Lofgren family closer.

“It’s made us better parents and brought Kris and I closer,” said Dan, who added people often tell him they don’t how he handles having a child who requires so much medical care.

“But I think most people in our situation would adapt,” he said. “You get used to a different kind of normal.”

And there are rewards — such as watching Kathryn stretch her legs to touch her brothers when they move too far away from her on the couch or seeing her learn to blink her eyes — once for yes and twice for no — to answer questions.

Kathryn even found a way to give back to others. When her long red hair was trimmed, Dan said, the hair was donated to Locks of Love, which provides hairpieces to financially disadvantaged children suffering from long-term medical hair loss from any diagnosis.